Ryan White - My Own Story (12 page)

Rules are rules, the judge said. We had to present our case at a hearing on November 1 before we could sue. “This judge is a wimp,” Mom said to Mr. Vaughan as we left court.

Meanwhile Mrs. Johnson and over a hundred other parents pledged to sue too, if Western backed down and let me come to school. One way or the other, the school board was going to be in court. I was turning into some kind of strange new First for Kokomo.

Heath thought the whole dumb thing was pretty ironic. “You’re unAmerican, Ry-man,” he said. “Suing to go to school. You don’t know how lucky you are. You can stay home legally.”

“You’re not home all the time, the way I am,” I replied. “I can’t have fun unless I have something to do.” I needed school. Besides, as my cousin Monica said, “If you don’t go to school, you will grow up dumb.”

By then it was the end of August, almost the first day of school. Western had promised to send me a tutor for free, but no one wanted the job. One woman told the school that she’d checked with her father, a doctor, and he’d said, “Stay away.”

Mom called Mr. Colby, who claimed he’d solved our problem. Western was going to give me something no other seventh grader had: a two-way phone hookup between our house and my classroom. (A lot of people thought I had a computer system and screen so I could see the class—but I didn’t.)

“Western still doesn’t get it,” I complained. “I don’t want to be treated worse than other kids, but I don’t want to be treated better either. I just want to be the same.”

But Mom said, “If the school is willing to do this, we have to try it.”

Ryan, age thirteen, and Jeanne as Ryan follows his science class via telephone hookup.

On the first day of school, all the reporters came back to watch me try out my new speaker phone, which was set up in my bedroom, next to my computer. Some of them were surprised to see our Christmas tree was still in our living room. Mom had left it up all year, just in case I got sick again. Mrs. Samsel, my science teacher, had to test the phone hookup several times before we got it going right. Even so, sometimes I could hear her and my other teachers, sometimes I couldn’t—especially if they moved around the classroom. I never caught what my classmates were saying at all. It was very frustrating. I couldn’t see the work on the blackboard, and what was I going to do when the class had to watch a film?

When class broke for lunch, I slammed down the phone. A reporter from a local station asked me what I thought of the hookup.

“It stinks,” I said. I wanted to say, “It sucks,” but this was television.

Andrea’s first day back was no fun either. First she found out that a kid I liked a lot, who had come to see me in the hospital, had started going around making fun of me. Then a couple of other kids came up to her at the lockers, smirking. “We know how your brother
really
got AIDS,” they sneered at her. Andrea is strong and has a lot of muscles from skating. She doesn’t talk much, but when she says something, she means it. “Want me to deck you?” she asked them. The kids slunked off—but first they tossed a few more insults over their shoulders. They even said Heath was a fag too, because he hung out with me.

“We can all survive this,” Mom said. “Just keep your heads held high.”

In the next few days I discovered one great big advantage to being on the speaker phone. If the teacher paused during class for kids to read or write something, I could usually finish ahead of them. Everyone else was stuck in class, but I was free to do as I pleased with the extra time. I made a few trips to the refrigerator, and then realized I could turn on the TV and watch cartoons until the teacher started again.

But once I made a fatal mistake and turned the volume up too high. Suddenly, through the speaker phone at school, everyone heard “Ya-ba-da-ba-DOO!” The entire seventh grade cracked up. Andrea or a friend always picked up my homework for me. That afternoon Andrea brought home along with it a stern note from Mr. Colby. “Ryan is not to watch television during classroom hours,” he wrote Mom.

After my main distraction was forbidden, I took to crossing off on the calendar each day I had to spend hanging on the speaker phone.

One afternoon I went to see my girlfriend Kris. I thought we could do our homework together. When I rang her bell, she came out on the stoop, but she didn’t seem happy to see me.

“What’s wrong?” I asked her. She looked at the step, at her house, at the sky—anywhere but at me.

“My parents don’t think we ought to hang out together anymore,” she mumbled.

I didn’t have to ask her why. There was no point talking about it. There was nothing I could change even if I wanted to, so I decided, Let’s not waste time. I hadn’t got any to waste.

“Okay,” I said. I heaved myself up off Kris’s steps and walked away.

“Ryan, I’m sorry,” she called after me. Kris’s parents were divorced, and she lived with her mother and stepfather. About a year later she wrote me that they had sent her away from Kokomo, to Detroit, to live with her father. I couldn’t help wondering if I was the reason, but I didn’t write back to ask.

In early September I got a change I liked even less. I had to go back to the hospital twice because I was coughing and vomiting all the time, I was running very high fevers, and I always felt cold and tired. When you have AIDS, any fever can be the start of big trouble. Everyone waits and watches you and worries about whether you’ll get worse. Dr. Kleiman thought that I might be getting pneumocystis pneumonia again. I was so sick, my hair got very thin. Every morning Mom would find my pillow covered with straight brown hairs. She didn’t tell me about this; she knew it would really upset me. So long as I had my looks, I could handle AIDS semi-okay.

While I was in the hospital, I had two seizures. I don’t remember anything about them, but Mom does. It’s very frightening to see someone having a seizure. Because I had been vomiting so much, my body wasn’t absorbing sugar fast enough. My blood sugar dropped way too low, and when that happens—well, in the old days, people used to think a seizure meant you were being possessed by the devil. Mom was terrified.

The first seizure happened around 3:30 in the morning. I woke up, and felt like drinking something for once, so Mom had given me a Coke, which can taste good when you’re feeling sick to your stomach. I could only drink about half of it. That’s all I remember, but Mom says that the next thing I did was tell her, “Put this Coke in the refrigerator so it’ll be cold tomorrow.”

Mom was surprised, because I never will drink old Coke. “I’ll get you a new one,” she said, and went down the hall to the soda machine.

When she walked back into my room, I was sitting up in bed, stiff like a mummy. “I can’t see you,” I said. Mom was confused: Was I playing some game with her?

Then all of a sudden Mom saw my eyes bulge and roll up in my head until only the whites were visible. My entire body began to shake and jerk uncontrollably in every possible way. Some people howl like a dog or a wolf during a seizure. I made low, growling, guttural noises.

Mom was the most frightened for me that she’s ever been. She ran out in the hospital corridor and started screaming for help. The nurses were having a party, so no one came right away.

I had another scary seizure about five o’clock in the morning. But after that my vomiting stopped, and I began to improve. I managed to keep up my schoolwork, and I even got good marks in almost every course. I also must have gotten around five thousand letters while I was in the hospital—from all over the country and the world, even Russia. I got more T-shirts than I would ever end up wearing. Someone who’d heard about my collecting comics even sent me a rare, old one worth sixty dollars.

“Sixty dollars?” Mom said.
“That
is crazy! Do you know what I could do with sixty dollars?”

Some people tried to help us with our bills. Alex Tiensivu, a really nice songwriter from New Jersey, wrote a song about me called “A Little Boy’s Dream.” He came to see me in the hospital and brought me a tape of the special song he had dedicated to me. He even wrote a sequel called “Quite a Sensation.” He was going to try to sell copies to raise money for me, but I don’t think he did very well. A high school in upstate New York put on a variety show called “Tryin’ for Ryan.” They raised a thousand dollars for us and sent us the check along with a videotape of their show. To keep up with my thank you’s, Mom helped me write a form letter. “Thank you very much for writing,” we started out. “It feels good to know other people are thinking of me . . .” I mentioned my dog and some of the things I liked, like pork chops and comics. Even though we had the letter printed up, with a picture of a dog on the bottom, I signed every one myself. My signature got fancier and fancier. Occasionally I made it diagonal, and the “R” grew to two inches.

Other people tried to help me get well. Because many gay men get AIDS, some of them had organized groups in New York and San Francisco that kept track of new drugs that were just being tested, and weren’t available yet. Or they found out about treatments that seemed to work that many doctors weren’t aware of. Some people from these groups started calling Mom to give her free advice and information, and suggest questions to ask Dr. Kleiman.

Dr. Kleiman seemed to be keeping me alive, though. When we could, we tried to pass the help we got along. I got a few calls from another teenage hemophiliac with AIDS. His name was Mark, he was thirteen like me, and he lived in Swansea, Massachusetts. Mom talked to his mom too, and told her about my gamma globulin therapy, which she hadn’t heard about.

Mark and I compared our collections. He had some G.I. Joe figures, but mainly he was into baseball cards. He had every one that had come out since 1979. I was amazed that before Mark had been diagnosed with AIDS the summer before, he had been a star Little League player—a shortstop and a pitcher, no less. For a hemophiliac to play those two positions, where you might get hit by a ball at any time, is a big achievement.

“Man, you must really know how to play ball,” I told him. What’s more, Mark’s school had let him come back in September without any fuss. They had even kept his last name a secret, so no one could bother him.

“Sounds like your school doesn’t want to be another Western,” I said. But all his life Mark had wanted to be famous. He wished he could go on TV and give interviews, the way I had.

“Are you nuts?” I exclaimed. “You don’t know how lucky you are. If you’re famous, how do you know whether people like you for yourself? Besides, once they know your name, you never get left alone.”

I told Mark about one photographer who kept calling and calling our house, saying, “You don’t understand! This is for the cover of
Newsweek!”

I told him, “I understand, and I don’t care!” So he tried showing up at our house unannounced, knocking on our door, looking in our windows, trying to take me by surprise. I would run across the street to Blair’s house and hide in the garage. His mom had to tell me when the coast was clear, and I could run home again.

Mark seemed even more impressed that this obnoxious photographer had been after me. Just goes to show you—the grass is always greener. I began to notice that the farther away from us people lived, the more they thought we were great and supported what we were doing. Closer to home, it was another story.

On one trip to the hospital Mom and I stopped off at a diner in Indianapolis. The owner recognized us. We asked for glasses of water. He wouldn’t let us have any; he gave us cans of Coke instead. As soon as we had finished eating, he had our waitress throw away all our glasses and dishes. “Let’s come back every week,” I suggested. “Pretty soon they won’t have
any
dishes left.”

While I was in Riley again, Mom brought in my favorite posters for my room. I had to have the one of Alyssa Milano! Mom and I watched TV together and kept up with the news. You know what people used to say in the sixties—“The whole world is watching.” The whole world was sure watching Kokomo then. Some parents in Queens, New York, were keeping Kokomo company by marching up and down outside a school because their board had let a kid with AIDS in, but wouldn’t say who it was. The protestors had some pretty silly signs, like “Enter at Your Own Risk” and “Good Grades, Not AIDS.”

Mom said that when she thought about that bus trip back from Chicago, and how she’d worried that my blood might have gotten into a cut on her hand, she could feel for the parents in Queens and Kokomo.

Next we watched a meeting of parents in Kokomo, asking a doctor questions about me and AIDS. One father stood up and demanded, “Can you give me an absolute guarantee that my daughter is safe with this boy in school?”

Just like Dr. Kleiman, the doctor wasn’t about to guarantee anything. Doctors and scientists never will. He did talk about two new studies, one of people looking after AIDS patients, the other of families living with AIDS patients. No one in these studies had been infected.

“There just aren’t any one hundred percent guarantees in life,” Mom said. “Think of all the children who die in car wrecks.”

Just then someone familiar showed up on the tube. Mr. Burkhaulter, my math teacher, was saying he didn’t want me back in school.